Is Schizophrenia the 'Miscellaneous' of Mental Illnesses?

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People diagnosed with schizophrenia can experience a wide range of symptoms - everything from delusions and hallucinations to paranoia and emotional flatness. Can such a broad diagnosis really serve everyone it is given to?

Many people think it can't. In fact, a growing number of psychiatrists are working to abolish the diagnosis altogether. In this interview, Dr. Peter Stastny, an assistant professor of psychiatry at Albert Einstein College of Medicine in New York, talks about the history of schizophrenia as a diagnosis, the impact of lumping together patients with contradictory symptoms under one label, and how pharmaceutical companies have helped shaped the diagnosis.

The History of Schizophrenia Diagnosis

Dr. Stastny:
Professor Eugene Bleuler, [an early psychiatrist] in Switzerland, coined the term schizophrenia in 1908, which is nearly a century ago. He did that in response to Emil Kraepelin's notion of dementia praecox. [Kraepelin was a late-19th and early-20th century German psychiatrist who is considered the father of modern psychiatry.] So in fact the first use of the term "schizophrenia" was actually an advance over the earlier terminology that Kraepelin introduced, which described that schizophrenia as a form of early-onset dementia.

They had many people in institutions at the time that were exhibiting a variety of signs. The three major people – Kraepelin, Bleuler, and the third person was a [German] psychiatrist by the name of Kurt Schneider – each had their own way of emphasizing different symptoms. For instance, Bleuler had four symptoms that essentially were key for him. Dr. Schneider had four different symptoms that were the core symptoms. Dr. Kraepelin had yet another set of symptoms. So already in the very beginning we have a great variety of symptoms that are considered essential, and they're really not identical.

Schizophrenia seemed to have been a very catchy term. The idea that there was a split in the person's mind – which is what schizophrenia means, split soul, split mind – seemed to have caught on among not just psychiatrists but also the general population even though it was very clear from the beginning that this split was not actually part of the diagnosis. When Bleuler introduced the term, what he was talking about was a split among different aspects of a person, meaning like feelings were separated from thinking. Emotional responses were separated from cognition. So it wasn't like a person who has two personalities or more.

There are huge problems with the schizophrenia diagnosis. "Schizophrenia" is really a catch-all phrase. It's a procrustean bed [an arbitrary standard to which exact conformity is forced], meaning that everybody that has symptoms remotely related to psychosis is being forced into this corset, if you will, and in the end that's done a lot of disservice in terms of science, in terms of social status, in terms of treatment and in terms of recovery.

Is Schizophrenia Truly a Lifelong Illness?

Dr. Stastny:
The question of prognosis was a big debate between Kraepelin and Bleuler. Kraepelin thought that schizophrenia, when he still called it dementia praecox, was essentially a disorder with a terrible prognosis. It was a disorder where people would deteriorate over time and end up in a nearly vegetative state, in what was called a residual state of dysfunction. Bleuler decided that was not the case, that there were many different types among the diagnosis of schizophrenia of prognosis, of outcomes. That's one major reason why the term is poor.

One can have symptoms of psychosis that remit. Essentially a person can have a psychotic episode for a number of days. A person can have psychotic symptoms for a number of weeks. They often remit with treatment or even without treatment, with medication or even without medication. This condition that we're now calling schizophrenia - although I have to tell you that I don't like to use that term at all - it lumps together a number of different psychotic experiences.

Sometimes people have very mild symptoms and are still considered schizophrenic. Many people who have that diagnosis are quite functional. Even in the old days when there were no medications, on average more than 60 percent of people in state hospitals worked. In fact, many of the institutions ran based on patients' labor. And 80 or 90 percent of those people were diagnosed with either dementia praecox or schizophrenia. So the question of disabling, how disabling? Can you be fully functional with that diagnosis?

How the 'Catch-All' Diagnosis of Schizophrenia Limits Research

Dr. Stastny:
One major issue about the schizophrenia diagnosis of lumping everybody together is that you are basically unable to find out what different subgroups actually may be exhibiting, for instance, a neurological or a brain disturbance if there was one. So you would never be able to say that schizophrenia is a brain disease. There may be some people that are under this label that actually have a neurological condition, but it's probably a small minority.

Some studies have been able to show that there are certain anatomical differences with people who have a diagnosis of schizophrenia compared to other groups. Those have to do with the size of the ventricles. These are spaces inside the brain that are filled with liquid, and sometimes they find that some people with that diagnosis have a larger size, possibly meaning a smaller brain mass altogether.

Now, there's a big controversy about those findings. One big issue is that these people have been exposed to a lot of medications, have been exposed to institutionalization, have been segregated from society. Is this a consequence of those things rather than a primary sign of so-called schizophrenia? Some studies have found that there may be a subgroup again that already shows some of these differences early on, but there's no clear finding. For each study that finds differences, there are other studies that don't find differences.

The current subgroups (catatonic, disorganized, paranoid, residual and undifferentiated) have certainly not worked at all. They haven't worked in terms of research. I'll give you an example. The paranoid subgroup has on average a much later onset, toward the end of the 20s, whereas the disorganized and undifferentiated subgroups have a much earlier onset, an average nine or ten years earlier. So those two groups already are very, very different. Now, if you do studies where those two groups are put in the same diagnostic category, you're bound to find meaningless results.

It is absolutely certain that catatonia, which has become quite rare, is a separate entity. It has absolutely nothing to do with what's commonly known as schizophrenia. Why it is considered a subtype still beats me. I really cannot explain that at all. There are Scandinavian studies that show that catatonia is a disorder that potentially has to do with the thyroid metabolism. The manifestations are completely different from the other subtypes.

Of course, undifferentiated is just that. It's nothing. It's essentially a subset type that doesn't exist. It's a category you can throw everybody in where you don't know what else to say about it.

Do Some People Have a Genetic Predisposition to Schizophrenia?

Dr. Stastny:
There are probably certain people with a tendency or a vulnerability for psychosis that have strong genetic predispositions, but if you're looking at the genetics of schizophrenia, then you're looking at genetics of something that doesn't exactly exist as a diagnostic category, so already you're having a problem. There is a subgroup of people who might have a very early onset, who might have slight neurological deficits growing up, who might have some other developmental problems. They may be an entirely different group, and you may find some genetic factors there. There has not been any clear-cut genetic connection.

How Drugs Changed the Face of Schizophrenia

Dr. Stastny:
Almost everybody has had moments of psychosis in their life, whether it is a fleeting visual hallucination or hearing a voice. The percentage of people who have never been diagnosed with anything who actually hear voices is much higher than any percentage of people who have been diagnosed with schizophrenia. Also, most people can induce psychosis with recreational drugs. So you can see that psychosis is a much broader concept than just a mental illness.

Even people who have been diagnosed with schizophrenia, or even people, as I would rather put it, who have experienced frequent or ongoing psychosis or altered states of mind, can have very different relationships to voices that they may be hearing. You can also say that about people who have been institutionalized. Some people enjoy hearing voices. Some people are kept company by hearing voices. Some people don't want to take medication because the medication might stop the voices. So that's a whole phenomenological realm that was basically closed off by psychiatrists who believe in the DSM-IV (Diagnostic and Statistical Manual of Mental Disorders), who use hallucinations simply as a symptom of schizophrenia and not as part of a very full range of possible experiences, including people who have never been diagnosed.

Voices are another way of accessing what the person has experienced and how the person is dealing with it. For example, a large percentage of people who are experiencing psychosis have been traumatized in early life or in adulthood – sexually, physically, many different ways. A lot of times voices relate to those traumas. They relate to the traumas in the past and they relate to traumas in situations in the present. Sometimes the content is pleasant. Sometimes the content is encouraging. Sometimes the content is horrifying and scary and upsetting. So to not take that into consideration would be to really be a very poor clinician.

Hearing Voices: A Different Way of Looking at Auditory Hallucinations

Dr. Stastny:
There was a Dr. Heinz Lehmann in New York State who, in 1954, traveled with a briefcase full of Thorazine (chlorpromazine) across the Canadian border into New York State and was the first to import Thorazine. Soon thereafter, in 1954, or '55, Thorazine was used on patients who were institutionalized. Ever since then it's been continually used in a fashion that basically says when a person receives a diagnosis of schizophrenia, life-long medication is the only answer.

At the beginning when Thorazine was introduced, it essentially calmed everybody down. It was like a pall over institutions. It was a very nonspecific, very general effect. Then people started to say, 'Well, if everybody is so calm, we might as well let them out.' The whole idea that a medication was specifically helpful for certain symptoms of so-called schizophrenia came about much, much more gradually. Of course, over the years pharmaceutical companies needed to develop new products.

For many years pharmaceutical companies went back and forth in saying they have a drug for schizophrenia or they have a drug for the symptoms of schizophrenia. To this day I think that the FDA will not necessarily approve a drug that's for the entity called schizophrenia. It's mostly for symptoms, like hallucinations, delusions or so-called negative symptoms, which are amotivation and a variety of other social, interpersonal problems that people may be having.

But the diagnosis of schizophrenia has been essentially a marketing tool for the pharmaceutical industry, which basically opens up a rather vast market, although it doesn't seem to stop them because in essence all psychopharmacological drugs are being used for almost all diagnoses across the board.

I think that, yes, some people have been helped by the introduction of pharmaceutical drugs. Unfortunately, the way medications are being used means it often takes many years for the person to find a way for medication to help them. A person who may be, for example, experiencing very unusual extreme states of mind and doesn't understand what's going on is often given a cocktail of several drugs with many side effects. Then of course once they're released from the hospital, they're no longer interested in taking those. The whole question of how drugs can be helpful, under what circumstances and whether people can be helped without drugs has been off the table in psychiatric research for essentially 50 years.

But to this day we do not have any particular algorithms that say which ones of the anti-psychotics that are on the market - there are probably close to 20 - are better for which type of problem that the person may be having. So it's often a guessing game, and it's a very inexact science how you go about actually trying out different drugs.

Drug-Free Approaches to Schizophrenia Treatment

Dr. Stastny:
There was a program called Soteria which a psychiatrist named Loren Mosher introduced in California in the '70s, and in that program people who were experiencing acute psychotic symptoms would be admitted to a house. In San Jose, for example, there were 10 people who lived there. They would go through a period of time of community, of intensive support, of being able to experience the psychotic symptoms safely and talk about them and be taken care of, but also make the house run. Most people there were not given medication, and a very significant proportion of people got better.

In fact, they compared those people to people that were admitted to the hospital in similar situations. In the very short term, the first three weeks basically, they had the same rate of recovery as with medication, which is astonishing actually. Here you have a fairly benign psychosocial intervention that enables one to do as much over the short term and even more over the long term for many people without medication.

So the idea today that when a person has the earliest signs of psychosis, even before they have a major episode, you should start treating them with neuroleptics [anti-psychotic medications] makes it impossible to find out who would have recovered without medication. In that way it's very clear that the psychopharmacological approach prevents and unduly harms people that would have recovered without medication.

I think the treatment that is in a way the most radical alternative is something very old-fashioned, which is psychotherapy. I would say that everyone who goes through this deserves to be treated by someone who is experienced in providing psychotherapy for someone going through that kind of state.

The crisis usually happens in the context of their family, so there has to be some way of bringing the family in. There is, for example, an approach in Scandinavia that's called the open dialogue, where a team of mental health professionals go into a person's home, and they begin to discuss the situation, and they meet frequently and intensely with the family. They treat everybody the same, and they also have no secrets. They don't communicate separately. It's essentially an open communication over a period of time which has great results.

Challenging the Diagnosis of Schizophrenia

Dr. Stastny:
I think it would be interesting for psychiatrists to get together and start from scratch mapping schizophrenia out. Even using a term such as integration disorder, which I don't think is adequate for everyone, but to begin to actually look at the phenomenology, what people are experiencing, how they are relating to it, how long it's been going on, what they think is going on, and what kinds of particular vulnerabilities they have. Then you can come up with maybe a whole new schema of diagnosis. There are some efforts even within the psychiatric establishment to make that happen, but it's going to take way too long. I think to kick start it would be to just simply say, 'Let's not use the term 'schizophrenia' anymore.'

One of the major things that have happened over the last 20 years has been the increasingly vocal constituency of former and current patients, people who have been diagnosed, people who have been institutionalized, hospitalized, all of that. They would call themselves survivors, would call themselves ex-patients, would call themselves consumers and so forth. I think that's been a major influence even in the media.

Ever since we [have begun to] hear more from people who experience these extremely difficult times, our perspective is changing. We don't only hear from family members anymore who say, "Look how terrible the situation is, look how badly my son is doing.' We also hear from people who have recovered, who are in recovery, who are basically challenging the system, who are offering alternatives. Many people who have been diagnosed with schizophrenia have turned out to be psychotherapists or psychiatrists even.

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